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  • Home
  • About and Resources
  • Symptoms
  • Doctors
  • Treatments
  • Podcasts Videos & more
  • Covid and CFS/ME
  • travel with CFS/ME
  • Library
  • My Story

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Covid and CFS/ME

Resources on CFS/ME and Covid: https://solvecfs.org/the-me-cfs-community-and-covid-19/


About Vaccinating for Covid if you have ME/CFS, by Dr. Nancy Klimas,  renowned  ME/CFS  expert.


"COVID kills people. It kills people with over activated and damaged immune systems preferentially – and that is what ME/CFS is all about. So while there certainly is a risk of an ME relapse with these hyper reactive vaccines (the first wave to be released), you have to weigh the possibility of an ME relapse against the risk of death from COVID-19."


"can drive a classic ME/CFS relapse. So, take an antihistamine before and for several days after the vaccine – the strongest one you can tolerate. (Benadryl is one of the strongest, Zyrtec is another good choice)."

https://www.nova.edu/nim/To-Vaccinate-or-Not-with-MECFS.html



First, it's too early to know much about covid and anything, but we know a few things.


-CFS/ME experts agree that any major viral illness (which covid is) can cause increased severity of symptoms in CFS/ME patients. (NIH, CDC, Stanford, etc.)


-CFS/ME can follow any viral illness


-Fauci has said that it is likely we will see more cases of CFS/ME following covid.  He notes that many people at this point have CFS/ME symptoms following covid (as quoted in three of the articles below). I assume since the definition of CFS/ME involves 6+ months of fatigue no one can confirm a diagnosis of CFS/ME yet (as ofJuly) since there hasn't been enough time. 


-After SARS (a close relative of covid 19), up to 30-40% of survivors got CFS/ME (https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/415378)


As of 10/8/2020 I am seeing a split in the medical community.  CFS experts and those who take CFS seriously are saying the "post viral covid fatigue" is CFS/ME.    Doctors who never believed CFS/ME was real or never understood it are admitting that the symptoms are exactly the same, and that CFS/ME happens after any number of viral illnesses, but they still want to call it something different, which may be detrimental to CFS/ME research and patients seeking treatment that specialists in CFS/ME can provide.


*There are other long terms effects such as lung scarring and damage to organs from blood clots which occur post-covid and have nothing to do with CFS/ME


In later articles there is more traction in the medical community linking "Long Haulers" to ME/CFS (3/21/2021)


US ME/CFS Clinician Coalition Letter: Post-COVID “Long Haulers” and ME/CFS

October 30, 2020 link 



ARTICLES on Long Covid’s  Relationship  with  ME/CFS


Will Covid-19 Leave an Explosion of ME/CFS Cases in its Wake?

Solve ME  (4/2/2020)


Researchers Expect COVID-19 Will Cause Surge Of Chronic Illness, Including ME ME Action, (5/10/2020)


Researchers warn covid-19 could cause debilitating long-term illness in some patients Washington Post (5/30/2020)


Coronavirus may cause fatigue syndrome, Fauci says  CNN (7/9/2020)


America’s top covid doctor turns ME/CFS into a subject for general discussion as the pandemic deepens ME Association, UK (7/10/2020)


Dr. Anthony Fauci says that Post-Covid Syndrome is "highly suggestive of" Myalgic Encephalomyelitis ME Association, UK (7/10/2020)


Post-Covid syndrome, Myalgic Encephalomyelitis, and the recurring pseudoscience of mass hysteria  (7/27/2020) The Science Bit (UK)


Rehabilitating COVID-19 “Long-Haulers”: The ME/CFS Connection Mebridge (8/4/2020)


Chronic fatigue syndrome a possible long-term effect of Covid-19, experts say CNN CNN (8/7/2020)


Doctors are finding striking similarities between chronic fatigue syndrome and long-term coronavirus symptoms 

Business Insider (8/22/2020) 


What if you never get better from Covid-19? New York Times (1/21/21) *with a deep dive into CFS/ME


Some Long-Covid cases Have Met the ME/CFS Diagnosis, but That  May Solve Nothing  The sad thing is how shockingly little we know about myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). Medium.com  2/24/2021 


The tragedy of Long Covid Harvard Health Publishing, Anthony L Komaroff, MD, Editor in Chief (3/1/2021)


Long Covid isn't as Unique as we thought: The nagging symptoms long-haulers experience reveal a frustrating blind spot in medicine. VOX (3/11/2021) 


A Stanford scientist's quest to cure his son could help unravel the mystery of Covid-19 long haulers CNN (3/12/2021) 


The Medical System Should have Been Prepared for Long Covid VICE (3/18/2021)


How COVID long-haulers might renew the focus on chronic fatigue syndrome
Podcast on NPR "WHY" (3/26/2021)


Long Covid isn’t as unique as we thought- The nagging symptoms long-haulers experience reveal a frustrating blind spot in medicine. Vox (4/7/2021)


Little-known illness turning up in COVID long-haulers- by Cindy Loose, Kaiser  Health News on pbs.org (6/1/2021)


‘I felt betrayed’: how Covid research could help patients living with chronic fatigue syndrome- by Christina Frangou, The Guardian (6/30/2021)


How Long COVID Is Helping Young Women With Chronic Fatigue Syndrome

Refinery 29, Lucia Osborne-Crowley  (8/15/ 2021)


For many, long COVID looks a lot like chronic fatigue

by Johns Hopkins University (8/26/2021)


Long-Haulers are Fighting for Their  Future by Ed Yong, The Atlantic  (9/1/2021)


What Causes Long COVID Is A Mystery. Here's How Scientists Are Trying To Crack It, All Things Considered, NPR 9/20/2021


Could long covid unlock clues to chronic fatigue and other poorly understood conditions? Washington Post, Frances Steed Sellers (11/7/2021)


So you've got long COVID? Here are 5 things you should know.  SF Chronicle, Effie Seiberg (11/8/2021)


Even Health-care  workers  with  long  COVID  are  being  dismissed, the Atlantic, by Ed Yong (11-24-2021)


Unknown Long COVID Connection – myalgic encephalomyelitis / chronic fatigue syndrome, Mirage News (Australia) (11-25-2021)


For patients with long COVID, chronic fatigue syndrome may offer a guiding star, NPR Mallory Yu (11-29-2021)


Could this scientist have the answer to long Covid?, The Times (UK) (1/11/2021)


Long COVID Shouldn’t Have Taken Us by Surprise, Infection Control Today, (1/28/2022) Frank Diamond


COVID-19 NEWS: For Many, Long COVID Looks a Lot Like Chronic Fatigue John Hopkins Medicine Newsroom (8/25/2021)


Long COVID is ruining lives, but it also presents Australia with an opportunity ABC News Australia (10/17/2021) Emily Sakzewski

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